I'm new to this websight and the world of LBD. My Mom is 84 years old and has been being treated for Parkinsons for the last 9 years. Only recently the last week in May did my Mom stop sleeping, the hallucinations increased greatly, the state of not being awake but not asleep. Everything that I've seen written in all your stories is my life. My Dad and I have worked out a pretty good system to keep Mom home, but the doctors have not found any medication to help my Mom sleep. Right now she is only on Simanet for the Parkinsons, melatonin, and 10 mg Namenda. She does not sleep day or night more than 15 minutes to half hour at a time, then she is up walking around and around. She can acutally stand in the middle of the room and fall asleep for a while, but if I try to get her to lay down she refuses. Do they ever sleep again for any length of time, or is this just LBD?

Sorry I didn't read your message sooner. My husband has been through several medicines to try and find a combination that will help him sleep longer than 30 minutes stretches. For about a month he has been taking the following at bedtime: 300 mg Trazodone, 1 1/2 mg Risperidone (for hallucinations), 9 mg Melatonin, 45 mg Temazepam, and 20 mg of Amitriptyline. You wouldn't want to try all of these at first, though. He began on the Risperidone, Temazepam, and Trazodone. We later added the Melatonin, and the last one was about 2 weeks ago when we began the Amitriptyline. He usually sleeps about 1-2 hours before needing assistance to go to the bathroom, or move from the recliner to the bed. He does have periods of sleep that last 2-5 hours most nights of the week. I wish you luck, as this is the hardest part of caregiving for me. I haven't had an uninterrupted night of sleep for about 5 months.

Wed Sep 09, 2009 12:13 pm

Cheri

Joined: Wed Aug 05, 2009 11:17 pmPosts: 26

Thanks Jeannie
I haven't had a chance to look at the websight for a while, so I just read your post. I will visit with the doctor about the meds you mentioned. I am having some luck getting my Mom to sleep. Right now the only med she is on is the Simonet for the Parkinsons. We took her off the Namenda because there didn't seem to be much change one way or the other when she was on it. I found a product called CALM. I give my Mom one and a half teaspoons of the CALM and one melatonin in the morning and the evening. I've been doing that for two and a half weeks and she is sleeping 2 to 4 hours at a time, and her mood is so much better. I will continue with that for a while and see how long it lasts, I know with Lewy things change from minute to minute. I have found a great tool for the night time, I put a security camera in my Moms room so I can check on her from my house which is about 200 yards away from my Moms house. We live on a ranch in Montana. It allows me to sleep better but still keep close track of my Mom.

Tue Sep 15, 2009 8:41 pm

Laurie

Joined: Sun Jan 11, 2009 8:17 pmPosts: 104Location: Arkansas

Hi Cheri, Wecome. I notice on your other post that you haven't mentioned any Exelon or Aricept. These usually help alot of lbd'er over all and just might settle your LO down. Let us know. Hope you have some help so you can get some sleep too. Laurie

Wed Sep 16, 2009 11:53 pm

Cheri

Joined: Wed Aug 05, 2009 11:17 pmPosts: 26

Thanks Laurie,
I'll visit with the doctor about these. We live in a very rural area so I only have a general MD for my Mom, but the doctor has been very good at trying to find out all she can about LBD. I got nervous about trying much more on my Mom because it seems that everything we give her works the opposite. She gets more difficult and angry and sleeps even less. My Dad and I feel like we're on vacation on the rare days she actually sleeps some.

Thu Sep 17, 2009 9:24 am

Dianne C.

Joined: Wed Oct 08, 2008 10:30 pmPosts: 976Location: Henderson, Nv.

Hello Cheri and welcome to the forum...land of info and understanding folks!
How does that old song go ...sleepless days, sleepless nights...lack of sleep is one of the brutal side effects of LBD...for both patient and caregiver. My LO did well with Seroquel. While he still got up many times for the bathroom at least he would go back to sleep.
The monitor is a lifesaver. When my hubby was in a hospital bed in our bedroom, I slept on the sofa. My son put a camera in his room and a monitor in the family room so I could watch him. Only problem...as his illness wore on I found myself staring at the monitor all night, afraid to go to sleep for fear I would not be awake if he needed me. Other than that I have to say I think it was the greatest aid we had.
Good luck to you on your journey in Lewyland.

_________________Dianne C.

Thu Sep 17, 2009 7:44 pm

Cheri

Joined: Wed Aug 05, 2009 11:17 pmPosts: 26

Thanks Dianne,
I'm going to have the doctor look into all the suggested meds everyone has been having some luck with, and what she knows about how my Mom reacts, hopefully something will start to help some. I keep track of my Mom during the night time and morning hours, then my wonderful Dad, who is 89 years old, is with her all day. We are luckier than most because we can get a break. My Mom was never angry or demanding her whole life,so some days are really tough when you just don't like them very much. Luckily she usually only stays that way a couple days at a time, then the Lewyland days are OK because she isn't so busy or angry.This truly is a cruel disease.

Thu Sep 17, 2009 8:30 pm

Dianne C.

Joined: Wed Oct 08, 2008 10:30 pmPosts: 976Location: Henderson, Nv.

Sounds as though you are on the right track. Yes, when they have a very smooth personality and then become someone we hardly know, it is very difficult...thankfully those moods don't last toooooo long...but long enough. I found that ... next to the bathroom issues...the hardest to deal with. It is a terribly cruel disease.

_________________Dianne C.

Thu Sep 17, 2009 9:21 pm

JGable

Joined: Sun Oct 18, 2009 9:45 pmPosts: 4Location: Aspen, Colorado

Affects of Seroquel

Hi Cheri,
I can tell you my Mom has LBD and was prescribed Seroquel 25 mg. to help with her hallucinations. She takes 25 mg. in the am and 50 mg. at night. Despite the various side effects she has, this drug definitely helps Mom to go into a very deep sleep at night. She was having restless nights prior to taking this drug. I am not advocating the use of this drug, as we are still testing it's effect on Mom, but I do know, it makes the patient sleep really well.
Good Luck.
J. Gable

_________________Jean Gable

Mon Oct 19, 2009 3:26 pm

Dianne C.

Joined: Wed Oct 08, 2008 10:30 pmPosts: 976Location: Henderson, Nv.

We had good results with Seroquel too. That said, some don't do well on it. You have to try different things till you get the right combination.

_________________Dianne C.

Tue Oct 20, 2009 2:13 am

Cheri

Joined: Wed Aug 05, 2009 11:17 pmPosts: 26

Thanks Jean,
You say it helps with sleep, does it also help much with the hallucinations? Because when my Mom is up all night and during the day also the hallucnations are terrible. As my Dad puts it some days when I ask how his day went, he'll say OK but Mom is chasing spooks around the house today. She has very few days without hallucinations.

Tue Oct 20, 2009 11:01 pm

dorthea

Joined: Sat Oct 06, 2007 4:28 pmPosts: 781Location: LA

Seroquel and hallucinations

Seroquel helps Mr B. when he has the ugly dogs trying to get to his feet or the big bad men with red faces who refuse to leave his room and they hide under his bed instead. Yes, it helps at our house.

I routinely give him 25mg seroquel at night along with 5mg melatonin for a good night's sleep. Some days if the need exists, I give a booster 25mg seroquel in the mid afternoon as well when I give the gabapentin early to help the feet which he thinks the dogs are twisting.

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